Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 It is with a very heavy heart that I write to you about ei's death. We were hoping that there would be hope for ei, but after meeting with the neurologist, things really did not seem like they would work out. ei had many brain abnormalities (agenesis of the corpus colossum, copolcephaly, and perhaps some other potential defects that were not entirely discernable on films). We felt that combined with his other defects (heart, respitory, spine, cranial facial, etc.) that his quality of life would not be good. had even tried to " leave " us a couple of times but we always intervened by putting him on a ventilator. went peacefully today after we extubated him (he had helped us along by dislodging his tube). After bouncing back a couple of times, he finally left us at about 12:45pm. We were there to hold him, hug him, kiss him (many times), tell him jokes and also to cry. But, he truly looked peaceful upon his death. Just like he was sleeping. Thank you all for your support during this time. Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 - I cannot imagine your grief. You and your family will be in my heart always. Michele W Aubrie's mom ei Slawski It is with a very heavy heart that I write to you about ei's death. We were hoping that there would be hope for ei, but after meeting with the neurologist, things really did not seem like they would work out. ei had many brain abnormalities (agenesis of the corpus colossum, copolcephaly, and perhaps some other potential defects that were not entirely discernable on films). We felt that combined with his other defects (heart, respitory, spine, cranial facial, etc.) that his quality of life would not be good. had even tried to " leave " us a couple of times but we always intervened by putting him on a ventilator. went peacefully today after we extubated him (he had helped us along by dislodging his tube). After bouncing back a couple of times, he finally left us at about 12:45pm. We were there to hold him, hug him, kiss him (many times), tell him jokes and also to cry. But, he truly looked peaceful upon his death. Just like he was sleeping. Thank you all for your support during this time. Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 My heart and prayers are with you. I hope you too can be at peace. Lori Myers Mom to (5 1/2), (2 1/2 CHARGE Association, CHD, ECMO 12 days, Bi-lateral Choanal Atresia, G-button, partial hearing loss), and Emma (8 months) Dallas, Texas nancyno5 wrote: > It is with a very heavy heart that I write to you about ei's > death. > > We were hoping that there would be hope for ei, but after meeting > with the neurologist, things really did not seem like they would work > out. ei had many brain abnormalities (agenesis of the corpus > colossum, copolcephaly, and perhaps some other potential defects that > were not entirely discernable on films). We felt that combined with > his other defects (heart, respitory, spine, cranial facial, etc.) > that his quality of life would not be good. > > had even tried to " leave " us a couple of times but we always > intervened by putting him on a ventilator. > > went peacefully today after we extubated him (he had helped us > along by dislodging his tube). After bouncing back a couple of > times, he finally left us at about 12:45pm. > > We were there to hold him, hug him, kiss him (many times), tell him > jokes and also to cry. But, he truly looked peaceful upon his > death. Just like he was sleeping. > > Thank you all for your support during this time. > > > Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 , My prayers are with you and your family. Peace, ei Slawski It is with a very heavy heart that I write to you about ei's death. We were hoping that there would be hope for ei, but after meeting with the neurologist, things really did not seem like they would work out. ei had many brain abnormalities (agenesis of the corpus colossum, copolcephaly, and perhaps some other potential defects that were not entirely discernable on films). We felt that combined with his other defects (heart, respitory, spine, cranial facial, etc.) that his quality of life would not be good. had even tried to " leave " us a couple of times but we always intervened by putting him on a ventilator. went peacefully today after we extubated him (he had helped us along by dislodging his tube). After bouncing back a couple of times, he finally left us at about 12:45pm. We were there to hold him, hug him, kiss him (many times), tell him jokes and also to cry. But, he truly looked peaceful upon his death. Just like he was sleeping. Thank you all for your support during this time. Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 , I'm so sorry to hear about your loss. I can't begin to imagine how you are feeling but my thoughts and prayers are with you and your family. Big cyber hugs being sent across the ocean. Elaine Mum to Elise (11yrs) & Jack (5yrs) CHaRGE Scotland. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Dear , Our thoughts are with you and your family. Our hearts as well. For us, it appears that our daughter with CHARGE also had a twin, however that twin did not survive beyond the first couple of months in utero. Please know that you are and always will be welcome here on this list. Either as a person who monitors the list by reading or by writing in, never hesitate to stay or come back if you wish. , Curt, Camille, and Kendra Keedy ei Slawski It is with a very heavy heart that I write to you about ei's death. We were hoping that there would be hope for ei, but after meeting with the neurologist, things really did not seem like they would work out. ei had many brain abnormalities (agenesis of the corpus colossum, copolcephaly, and perhaps some other potential defects that were not entirely discernable on films). We felt that combined with his other defects (heart, respitory, spine, cranial facial, etc.) that his quality of life would not be good. had even tried to " leave " us a couple of times but we always intervened by putting him on a ventilator. went peacefully today after we extubated him (he had helped us along by dislodging his tube). After bouncing back a couple of times, he finally left us at about 12:45pm. We were there to hold him, hug him, kiss him (many times), tell him jokes and also to cry. But, he truly looked peaceful upon his death. Just like he was sleeping. Thank you all for your support during this time. Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Bless you. My prayers are with you. I am glad his passing was peaceful and you were with him and able to have some control in a very difficult situation. Kim > It is with a very heavy heart that I write to you about ei's > death. > > We were hoping that there would be hope for ei, but after meeting > with the neurologist, things really did not seem like they would work > out. ei had many brain abnormalities (agenesis of the corpus > colossum, copolcephaly, and perhaps some other potential defects that > were not entirely discernable on films). We felt that combined with > his other defects (heart, respitory, spine, cranial facial, etc.) > that his quality of life would not be good. > > had even tried to " leave " us a couple of times but we always > intervened by putting him on a ventilator. > > went peacefully today after we extubated him (he had helped us > along by dislodging his tube). After bouncing back a couple of > times, he finally left us at about 12:45pm. > > We were there to hold him, hug him, kiss him (many times), tell him > jokes and also to cry. But, he truly looked peaceful upon his > death. Just like he was sleeping. > > Thank you all for your support during this time. > > > Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 , Our deepest sympathies to you and your family at this tremendously difficult time. I hope that the knowledge that ei was very loved during his short life will give you some comfort. Sincerely, Anne, mom of Penina (CHARGE, 6 3/4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 I am so sorry to hear of your loss. I pray that time will help ease your grief a little, although his memory will be everlasting. God bless you, you are in all of our hearts. love, barbra m -- ei Slawski It is with a very heavy heart that I write to you about ei's death. We were hoping that there would be hope for ei, but after meeting with the neurologist, things really did not seem like they would work out. ei had many brain abnormalities (agenesis of the corpus colossum, copolcephaly, and perhaps some other potential defects that were not entirely discernable on films). We felt that combined with his other defects (heart, respitory, spine, cranial facial, etc.) that his quality of life would not be good. had even tried to " leave " us a couple of times but we always intervened by putting him on a ventilator. went peacefully today after we extubated him (he had helped us along by dislodging his tube). After bouncing back a couple of times, he finally left us at about 12:45pm. We were there to hold him, hug him, kiss him (many times), tell him jokes and also to cry. But, he truly looked peaceful upon his death. Just like he was sleeping. Thank you all for your support during this time. Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 This bought tears to my eyes - thoughts and prayers are with you, I lost my second child - though not to Charge, following my first who has Charge, I now have a healthy son too. Nothing replaces those you lose but I truly believe those that leave us do so because it's best for them. I wish your family peace and happiness. Vicky (Jodie's mum) From: Michele Westmaas To: CHARGE Sent: Sunday, June 29, 2003 2:16 AM Subject: Re: ei Slawski - I cannot imagine your grief. You and your family will be in my heart always. Michele W Aubrie's mom ei Slawski It is with a very heavy heart that I write to you about ei's death. We were hoping that there would be hope for ei, but after meeting with the neurologist, things really did not seem like they would work out. ei had many brain abnormalities (agenesis of the corpus colossum, copolcephaly, and perhaps some other potential defects that were not entirely discernable on films). We felt that combined with his other defects (heart, respitory, spine, cranial facial, etc.) that his quality of life would not be good. had even tried to " leave " us a couple of times but we always intervened by putting him on a ventilator. went peacefully today after we extubated him (he had helped us along by dislodging his tube). After bouncing back a couple of times, he finally left us at about 12:45pm. We were there to hold him, hug him, kiss him (many times), tell him jokes and also to cry. But, he truly looked peaceful upon his death. Just like he was sleeping. Thank you all for your support during this time. Mom to Nicolas 3 1/2, Stefan 8weeks, ei 8 weeks 5/5/03-6/28/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 , I can't begin to imagine the grief you must be feeling. My son, Will, had a twin who died inutero at three months and I had a previous miscarriage. Not the same however, as having touched and been touched by the physical presence of your child. My thoughts and prayers are with you and your family. I wish you peace. Kim Quote Link to comment Share on other sites More sharing options...
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